Pulmonary Hypertension

Common Name(s)

Pulmonary Hypertension

Our mission is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness.

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Pulmonary Hypertension" for support, advocacy or research.

Caring Voice Coalition,Inc,

Caring Voice Coalition empowers patients who live with a life threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support. With a steadfast dedication to the organization’s set of core values, our knowledgeable, caring staff maintains our solid reputation as a dependable, responsive organization with a unique, holistic approach to improving the lives of our patients.

Last Updated: 17 Feb 2017

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Cure HHT (formerly HHT Foundation International, Inc.)

To find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT. To achieve this mission, the HHT Foundation will: fund research;educate families and physicians; provide linkages among people affected by HHT; collaborate with multidisciplinary HHT Treatment Centers worldwide; and advocate for and support those with HHT

Last Updated: 12 Feb 2016

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International Scleroderma Network

Our mission is to provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses.

Last Updated: 18 Apr 2010

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Kids with Heart National Association for Children's Heart Disorders

Our organization was formed in 1985 with the main mission of providing support, information, resources, and education for the families of the children living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis.

Last Updated: 4 May 2015

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PHCentral

Pulmonary Hypertension Information, Support and Advocacy Since 1999

Last Updated: 19 Dec 2012

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Pulmonary Hypertension Association

The mission of the Pulmonary Hypertension Association (PHA) is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness.

Last Updated: 25 Oct 2012

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General Support Organizations

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How do you compare to others with this condition?

Privately answer questions about your health. Let resources, you select, come to you.

Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

 
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Pulmonary Hypertension" for support, advocacy or research.

Caring Voice Coalition,Inc,

Caring Voice Coalition empowers patients who live with a life threatening chronic disease through comprehensive outreach programs and services aimed at financial, emotional and educational support. With a steadfast dedication to the organization’s set of core values, our knowledgeable, caring staff maintains our solid reputation as a dependable, responsive organization with a unique, holistic approach to improving the lives of our patients.

http://www.caringvoice.org

Last Updated: 17 Feb 2017

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Cure HHT (formerly HHT Foundation International, Inc.)

To find a cure for HHT while saving the lives and improving the well-being of individuals and families affected by HHT. To achieve this mission, the HHT Foundation will: fund research;educate families and physicians; provide linkages among people affected by HHT; collaborate with multidisciplinary HHT Treatment Centers worldwide; and advocate for and support those with HHT

http://www.curehht.org

Last Updated: 12 Feb 2016

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International Scleroderma Network

Our mission is to provide stellar worldwide research, support, education and awareness for scleroderma and related illnesses.

http://www.sclero.org/

Last Updated: 18 Apr 2010

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Kids with Heart National Association for Children's Heart Disorders

Our organization was formed in 1985 with the main mission of providing support, information, resources, and education for the families of the children living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis.

http://www.kidswithheart.org

Last Updated: 4 May 2015

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PHCentral

Pulmonary Hypertension Information, Support and Advocacy Since 1999

http://www.phcentral.org

Last Updated: 19 Dec 2012

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Pulmonary Hypertension Association

The mission of the Pulmonary Hypertension Association (PHA) is to find ways to prevent and cure pulmonary hypertension, and to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness.

http://www.PHAssociation.org

Last Updated: 25 Oct 2012

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General Support Organizations

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General Resources

Recorded Webinars

The Cure HHT webinar series informs patients and physicians of the latest information in HHT treatment, medicine and research, but also builds and strengthens the HHT community. The live webinars feature physicians and scientists specializing in HHT,

Updated 22 Dec 2015

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HHT Treatment Centers

An HHT Center of Excellence is defined as a medical practice that facilitates the comprehensive coordination of care necessary for treating a patient who has HHT. The standard of care must either meet or exceed the guidelines recognized by the HHT Fo

Updated 22 Dec 2015

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HHT Fact Sheets and Brochures

We encourage you to print and share the HHT Fact Sheets & Brochures with your local physicians and family members.

Updated 22 Dec 2015

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HHT Patient Resources

Link to a variety of patient resources

Updated 22 Dec 2015

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Physician Resources for HHT

A variety of resources available to physicians treating HHT patients

Updated 22 Dec 2015

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HHT Scientific and Medical Publications

View a comprehensive list of articles that have been published in various scientific and medical journals with references relating to HHT research and discoveries along with updates on medical treatments and procedures.

Updated 22 Dec 2015

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HHT Publications by Topic

For more in depth reading on specific areas of interest, please review the following articles.

Updated 22 Dec 2015

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Glossary of HHT Terminology

Laypersons Guide to HHT Medical Terminology

Updated 22 Dec 2015

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Insurance Issues

Insurance Resources for HHT Patients

state insurance regulators, medicare, social security and disability benefits, how to file an insurance appeal

Uploaded by Advocacy Organization: Cure HHT (formerly HHT Foundation International, Inc.)

Updated 22 Dec 2015

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Pulmonary Hypertension" returned 3982 free, full-text research articles on human participants. First 3 results:

IgG4-related disease of pulmonary artery causing pulmonary hypertension.
 

Author(s): Hui Deng, Sheng Zhao, Yunlong Yue, Yong Liu, Yali Xu, Jin Qian, Xiaorong Ma, Peiliang Gao, Xiaoyan Yao, Xin Jiang, Xiqi Xu, Zhicheng Jing, Yong Wang, Lei Pan, Xinying Xue

Journal: Medicine (Baltimore). 2018 May;97(20):e10698.

 

IgG4-related disease (IgG4-RD) is recognized as an immune-mediated condition with pathology features of lymphoplasmacytic infiltrate, storiform fibrosis, and obliterative phlebitis, accompanied with or without elevated serum IgG4 concentrations. However, few of pulmonary artery IgG4-RD ...

Last Updated: 31 Dec 1969

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Predictors of poor outcome in patients with pulmonary arterial hypertension: A single center study.
 

Author(s): Emilia Stepnowska, Ewa Lewicka, Alicja Dąbrowska-Kugacka, Ludmiła Daniłowicz-Szymanowicz, Paweł Zagożdżon, Rafał Kamiński, Zuzanna Lewicka-Potocka, Paweł Miękus, Dariusz Kozłowski, Wojciech Potocki, Grzegorz Raczak

Journal:

 

Pulmonary arterial hypertension (PAH) is a rare disorder with unfavorable prognosis despite implementation of specific PAH-oriented therapy. The aim of the study was to define predictors of poor prognosis in patients from one center treated according to the Polish National Health Fund program.

Last Updated: 31 Dec 1969

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Investigation of safety and efficacy of the new more thermostable formulation of Flolan (epoprostenol) in Japanese patients with pulmonary arterial hypertension (PAH)-An open-label, single-arm study.
 

Author(s): Kazuko Mihara, Aiko Ogawa, Hiromi Matsubara, Takumi Terao, Yoshitaka Ichikawa

Journal:

 

This study was conducted to evaluate the safety and efficacy of a new more thermostable Flolan (epoprostenol) solution prepared with the reformulated pH 12.0 diluent in Japanese patients with pulmonary arterial hypertension (PAH) receiving higher doses of Flolan than those typically ...

Last Updated: 31 Dec 1969

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Pulmonary Hypertension" returned 781 free, full-text review articles on human participants. First 3 results:

[The role of pulmonary hypertension on bronchopulmonary dysplasia].
 

Author(s): D Valenzuela, F Moya, M Luco, J L Tapia

Journal: Rev Chil Pediatr. 2017 Dec;88(6):699-706.

 

50 years ago, Northway described Broncopulmonary Dysplasia (BPD) in preterm infants exposed to mechanical ventilation. Since then, their survival has increased, nevertheless a "new BPD" has appeared and its incidence has not diminished. One of the characteristics of this pathology ...

Last Updated: 31 Dec 1969

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The safety of endothelin receptor antagonists in the treatment of pulmonary arterial hypertension: Protocol for a systemic review and network meta-analysis.
 

Author(s): Zhi-Chun Gu, Yi-Jing Zhang, Mang-Mang Pan, Chi Zhang, Xiao-Yan Liu, An-Hua Wei, Ying-Jie Su

Journal: Medicine (Baltimore). 2018 Mar;97(11):e0122.

 

Pulmonary arterial hypertension (PAH) is a progressive disease and ultimately leads to right heart failure. Endothelin receptor antagonists (ERAs) have been demonstrated to significantly improve prognosis in PAH. However, ERAs-induced side effects can result in poor patient tolerance. ...

Last Updated: 31 Dec 1969

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The efficiency of endothelin receptor antagonist bosentan for pulmonary arterial hypertension associated with congenital heart disease: A systematic review and meta-analysis.
 

Author(s): Hong-Yu Kuang, Yu-Hao Wu, Qi-Jian Yi, Jie Tian, Chun Wu, We Nian Shou, Tie-Wei Lu

Journal: Medicine (Baltimore). 2018 Mar;97(10):e0075.

 

Oral bosentan has been widely applied in pulmonary arterial hypertension associated with congenital heart disease (PAH-CHD). A systemic review and meta-analysis was conducted for a therapeutic evaluation of oral bosentan in both adult and pediatric patients with PAH-CHD. The acute ...

Last Updated: 31 Dec 1969

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Inhaled Nitrite in Subjects With Pulmonary Hypertension
 

Status: Recruiting

Condition Summary: Pulmonary Hypertension

 

Last Updated: 23 Jan 2018

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Targeting Right Ventricle in Pulmonary Hypertension Gilead
 

Status: Recruiting

Condition Summary: Pulmonary Hypertension

 

Last Updated: 22 Jun 2017

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The Effects of Commercial Air Travel on Patients Suffering From Pulmonary Hypertension
 

Status: Recruiting

Condition Summary: Pulmonary Hypertension; Pulmonary Arterial Hypertension

 

Last Updated: 1 May 2017

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